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    The Role of Body Image in PdiatrieIllness: Therapeutic Challenges and

    OpportunitiesAUDREY WALKER, M.D.

    The body image is the individual's mental representation of his own body, arepresentation that encompasses botb perceptual and ideational com ponents.In this paper I will explore the concept of body image, its development andits relationship to self-image and object relations in children with chronicmedical illness. From this discussion and with the help of specific cases ofmedically ill children I have treated for a variety of psychological symptoms,I will recomm end an approach to the assessmen t and treatm ent of thischallenging group o f pa tients.KEYWORDS: body image; chronic pdiatrie illness; psychology; objectrelations; adjustment

    I. INTRODUCTIONJ'aurais d tre heureux: je ne l'taispas. Il m e semblait que ma mre venaitde me faire une premire concession quidevait lui tre douloureuse, que c'taitune premire abdication de sa partdevant l'idal qu'elle avait conu pourmoi, et que pour la premire fois, elle, sicourage use, s'avouait vaincue. Il mesemblait que si je ven ais de rempo rterune victoire c'tait contre elle, quej'avais russi comm e auraient pu fairela malad ie, des chagrins, ou l'ge, dtendre sa volont, faire flchir sa

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    raison et que cette soire commenaitune re, resterait comm e une triste date.Du Cote de Chez SwannM arce l P ro us t , 191 3 , p . 47/ ought to have been happy; I was not.It struck me that my mother had justmade a first concession which must havebeen painjul to her, that it was a firstabdication on her part jrom the idealshe had jormed jor vie, and that jor thefirst time she who was so brave had to

    confess herself beaten. It struck vie thatif I had just won a victory it xuas overher, that I had succeeded, as sickness orsorroiu or age might have succeeded , inrelaxing her luill, in underm ining herjudgm ent; and that this evening openeda new era, xuould remain a black day inthe calendar.Swann ' s WayMarce l P rous t( S c o t t M onc r i e f f a nd K i lm a r t i n ,T r a n s . 1981 , p . 41)

    This passage comes from the first book of Marcel Proust's seven-volume biographical novel, A La Recherche du Temps Perdu (Remem branceof Things Past or, alternatively, In Search of Lost Time). In this passage, theyoung Marcel, aged approximately ten years and a long-time sufferer ofcrippling asthma, describes the first occasion when his beloved motheraccedes to his life-long attempt to have her stay with him at night, toassuage his terrible fear of the dark and solitude. Presumably, the life-longcries of respiratory distress mingled with anxiety had led to this ultimateconcession on the part of his mother. Her ministrations over the years hadsoothed and secured the young Marcel during these episodes of physicaland emotional suffering. These crippling bodily sensations derived fromearly physical illness and emotional suffering, and his mother's painedresponse to them had resulted in a m uch m ore profound outcom e: theyhad contributed to the formation of his sense of self and to the object

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    Body Image in Pdiatrie Illnessimagining what his mother experiences, "abdication from the ideal onceheld", at the moment that she concedes defeat and remains in her ailingson's room.In this chapter I will explore the concept of body image, its develop-ment and its relationship to self-image and object relations in children withchronic medical illness. From this discussion and with the help of specificcases of medically ill children I have treated for a variety of psychologicalsymptoms, I will recommend an approach to the assessment and treatmentof this challenging group of patients.II . THE CONCEPT OF BODY IMAGE IN CHILDREN ANDADOLESCENTS: PSYCHOANALYTIC AND COGNITIVE THEORY

    The past is never dead.I's not even past.Requiem for a NunWilliam Faulkner (1951, p. 535)Body image is the individual's mental representation of his own body,

    a representation that encompasses both perceptual and ideational compo-nents. In "The Ego and the Id", Freud, in referring to the concept of thebody image, made this important point regarding the integration of thepsyche an d soma: "Th e ego is first and foremost a bod y ego; it is no t m erelya surface entity but is itself the projection of surface" (1923, p. 16). Cath(1957) has given us a cogent definition of body image: "By body image wemean that composite picture which the individual has of his own body.This picture is a multiply determined, continuously developing and there-fore constantly changing, condensed representation of the individual'scurrent and past experiences of his own body. It has both conscious andunconscious aspects; it is, under certain conditions, extensible in space; itis largely a function of the ego and through the ego it not only exerts aprofound influence on the individual's behavior but on the perception ofhis environment as well." (p. 34). Bronheim (1996) expanded on thisdefinition of body image by including not only the perception of one'sbody, but also the emotional significance attached to various physicalparts. Schildre's (1950) deepened the dynamic concept of body image to

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    self. It is this comprehensive meaning of the term "body image," I willapply here.When one examines the issue of body image in childhood, it isnecessary to understand the developmental sequence that forms it. The

    body image develops from birth and progresses by integrating multipleperceptions throughout the lifespan. Children's conceptualization of theirbodies follows a well-established progression. According to Kafka, there isa developmental sequence of body-self experience differentiation that isparalleled in the object relations sequence. In early infancy, no differenti-ation exists between body and mind. The child experiences the body selfthrough sensations perceived within and outside of the body, and gradu-ally, the outer boundaries of the body are delimited, resulting in anawareness of the distinction between the inner self and the outer world.The sequence then moves to a period when there is "an awareness of thebody which is different from diffuse mental experience" (pp. 217-240).This is followed by a stage in which "awareness of differentiated thoughtsand feelings (is) separate from concrete body experience." By age three,"there appear thoughts divorced from bodily experience as well as thecapacity to distinguish between different types of experience", for examplethe ability to distinguish dream thoughts from thoughts about real events.In the preschool child, the body image is primitive, laced with fantasy andmagical thinking. In the school aged-child, body image becomes concrete.The child can name organs and functions and has a basic logical under-standing of some physiological processes. At this point in development, byages 6 to 8 with the achievement of concrete operational thinking, the childis able to recognize the uniqueness of his mind and body self. In this stage,the development of "the capacity to reflect on our own experience andbehaviors, as well as to conceive of others feelings, intents, desires,knowledge, beliefs and thinking, lead to an integration of the body self."(Krueger, 2004, p. 30).

    Adolescence is a particularly imp ortant and vulnerable period in bodyimage development. Rapid increase in height, changes in fat and muscledistribution, new acneiform eruptions, onset of menstruation and thedevelopment of secondary sexual characteristics, which carry high emo-

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    Body Image in Pdiatrie Illnessthe process of mutation of the body image during physical illness, includ-ing those

    1) intrinsic to the individual, such as gender, developmental age,cognitive abilities past physical illness and traumatic events, whichare in complex interaction with2) specific to the illness, such as visible deformity, extent of physicalpain, effect on cognitive function, effects on sexual and reproduc-tive functions, episodic course with uncertain outcome, and3) associated with social attachment and cultural mores such as theextent of peer and social supports, family moral and religiousbeliefs, socioeconomic status.Medical illness is not usually considered a part of the developmentalsequence in childhood. However, 10% to 2 0 % of children and adolescentssuffer from a chronic illness. When a medical illness is encountered in theearly years of life, its impact on body image, object relations and behaviormust be taken into account. For much of life, one is not consciously awareof one's own body. However, in times of pain, suffering and disfigurement,one becomes acutely aware of one's physiological self. The perceptions andexperiences involved in a medical illness in early childhood are obviouslysignificant events central to the development of body image, and these canbe reactivated in times of physical iUness later in life. The lifelong emotionalimpact on the developing child or adolescent of a serious medical illnesshas been well documented by numerous authors (Joubert, 2001).

    Specific patient characteristics have an impact on the degree to whicha medical iUness affects body image and psychological adjustment. Theresearch on psychological and body image problems in patients withmedical disorders is scant and unfortunately, does not include adequatecomparison groups to determine the differences seen in gender and agegroups compared with controls. However, research notes that age, gender,and family relations each have an effect on future body image.1) Age of Onse t: Pa tients with cancer that has its onset in adolescencehave more negative perceptions of their bodies than age-matchedcontrols. (Varni, 1995)2) Gender: In a study of the risk and protective factors in childrenwith chron ic illness, Th om pso n (1996) found that male gend er was

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    contrast, Meissner (1997) found that the greatest impact on bodyimage occurred in girls with physical problems of high impact andvisibility.3) Family and Social Networks: There is significant evidence thataspects of family functioning have a powerful impact on the overalladjustment of children with a variety of chronic illnesses includingcancer, HIV-related disease, diabetes mellitus, and inflammatorybowel disease (Newby, et al 2000; Grey 1998; Engstrom 1991).Specific characteristics of medical illness have been identified that areparticularly powerful in their effect on body image and overall psycholog-

    ical adjustment. These include acute versus chronic illness, immediateversus long-term, post-treatment effects, visible physical deformity, andsexual functioning.1) acute versus chron ic illness. H on g (1981) found that acu te physicalillness did not have a lasting impact on self-concept/body imagebut did alter body image in 37% of the children during the periodof acute illness.2) imm ediate versus long-term, post-trea tm ent effects. Pend ley(1997) found that in adolescent cancer survivors body imageconcerns, such as negative body image perceptions, did not de-velop untu several years after treatment concluded.3) visible physical deformity. As previously referenced, M eisner(1997) found that physical problems of high impact and visibityhad the greatest impact on body image in girls. (Meisner 1997)Varni found that children w ith cancer wh o perceived their physical

    appearance positively had better psychological outcomes includinghigher self-esteem (1995).4) impact on sexual functioning In illnesses which effect appearanceand sexual functioning, such as Inflammatory Bowel Disease andRenal Disease, adolescents can suffer significantly altered bodyimage leading to significant concern and derangement of datingand sexual intimacy. (Decker 2000).

    III. CASE MATERIALCASE ONE

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    Body Image in Pdiatrie Illnessincluding a classic malar rash, hypertension and pericarditis, renal failure,and g rand m al seizures. Although she respond ed to high-dose steroids andIV cytoxan with remission of her cardiac symptoms and seizures, hersymptoms of renal failure persisted and she was referred for twice-weeklyhemodialysis.Susie was a bright child who asked informed questions about herevolving illness upon first admission. She attempted to deal with hertreatments in an independent, "pseudo mature" fashion. However, overthe course of several weeks, the nursing staff noted that she began todevelop worsening symptoms of withdrawal, sadness, and anhedonia, Achild psychiatry consultation was requested and the decision was made tocontinue psychotherapy visits to aid in Susie's adjustment to her illness,

    Susie was the older of two sisters who lived with their 42-year-oldmother. Susie's parents had separated when she was 3 years old and thefamily had moved from Korea to the United States shordy thereafter. Theyhad had no contact with Susie's father since the move. Susie and her sister(who was one year younger than Susie) had a tense, competitive relation-ship throughout childhood, which Susie's mother reported had worsenedduring the course of Susie's illness. The two girls often were left alone inthe home during the day while their mother was at work. Susie's' sister,who was an accomplished athlete and student, was made responsible forcertain medical aspects of Susie's care.

    Prior to the onset of this illness, Susie had been healthy with noprevious hospitalizations, but her medical course became stormy, withmultiple "flares," Her initial attempts at mastery and compHance, com-bined with a mildly depressive stance, gave way to a rigid denial of herillness. She questioned her diagnosis, challenged the competencies of herphysicians, and was noncompliant with medications and the dietary re-strictions necessitated by her renal failure. She pursued Eastern therapies,such as herbal remedies, and even as the ravages of her illness caused herto lose weight and develop the stigmata of chronic steroid treatment, sheincreasingly denied the severity of her medical condition. In spite of herdramatic weight loss, Susie persisted in experiencing herself as ugly,disfigured, and fat. She began to make eccentric, restrictive food choicesthat led to further significant weight loss, resulting in a cachectic appear-

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    trouble with ambulation. On physical examination her pediatrician notedlimited right hip motion. Plain radiograph of the hip revealed abnormal-ities in the right hip and a referral to orthopedics was made. Theorthopedist diagnosed Legg-Calve-Perthes Disease. Anne was treatedconservatively with nonweight bearing braces and nighttime traction,which lasted, due to a recu rrenc e on th e left side, until she was eight yearsold.

    During the course of Anne's treatment, and in spite of vigorousphysical rehabilitation, significant atrophy of the muscles of the right thigh,calf, and buttock developed. It was necessary for Anne to wear orthoticdevices during her first two years of elementary school and to utilizesignificant support in going through her school days. In addition, aneminent orthopedics specialist in another city examined Anne numeroustimes during her 3-1/2 years of treatment. At the time of her treatment,parents were not allowed to remain with their children in hospital, so Annedescribed these hospitalizations as severe ruptures with her single mother,with whom she had a close, poorly boun daried relationship. D uring o ne ofthese brief hospitalizations a hospital worker sexually foncUed Anne du ringthe night shift, an episode that she concealed until many years later whenshe revealed this to a psychodynamic therapist whom she consulted as ayoung adult.

    In addition, Anne's orthopedist deemed that the multiple radiographsof Anne's pelvis were likely to result in lifelong infertility, and advisedAnne's mother about this. She shared this with Anne when she was anadolescent, several years after the conclusion of the illness.

    As a young adult, Anne came to treatment with a variety of psychoso-matic and eating disordered symptoms that had begun during her adoles-cence. Anorexia Nervosa, restricting type, which she had developed in herteenage years, had required a psychiatric hospitalization when her weightdropped to 80 pounds when she was 16 years old. This eating disorderremained highly resistant to treatment and Anne hovered between 90 to110 pounds through her college years, at which time she had reached aheight of 5 foot 8 inches. She also developed many psychosomatic andhypochondriacal complaints, fearing she had multiple illnesses and fre-

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    Body Image in Pdiatrie Illnessnot reach delusional proportion but were enduring and accompanied bymarked anxiety.IV. THERAPEUTIC APPROACH TO THE MEDICALLY ILLC H I L D . . .A. ASSESSMENTThe initial interview with and observation of the child with chronicmedical illness plays a significant role in understanding the child's devel-opment of body image and determining whether the medical condition hashad an impact on the child's body image or important object relations. Theassessment can also shed light on the process of recovery and psychologicaladaptation that has already taken place. This assessment will requireseveral sessions with the child and extensive interviews with importantcaretakers.1) Conduct a Proximal (since onset of current illness) assessment ofbody image. Obtain history of curren t physical condition includingpubertal status. A full psychiatric interview is important for theoverall assessment of the patient and h elps to mak e the distinction

    betwe en b ody dissatisfaction due to changes w rough t by the illnessitself versus perceptual distortions of the body image due todepression or other psychiatric comorbidities.2) Con duc t a historical assessment of body image. O bta in a history ofpast medical/surgical illnesses and hospitalizations. Were theseevents accompanied by separation from primary caregiver? Priorhistories of this kind render the patient more vulnerable to reac-tivation of difficulties with body image and object relations withthe onset of a novel episode of ulness. According to Bronheim(1996) "A sudden or overwhelming change in the body throughillness can superimpose itself on earlier experiences that wereconflict-ridden to initiate a depression or activate a psychophysi-ologic disease" (p. 518).3) Elicit signs and symptoms that are suggestive of early body imageproblem s, attachment disorder or post traumatic symptoms. These

    include sleep difficulties, feeding disorders/failure to thrive, affec-tive/social withdrawal, problems with mastery of new fears during

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    iors and regressive behaviors which m ay be clues to distu rbed bodyimage.5) Assess level of denial: T o dete rm ine the degree and adaptab ility ofdenial, a few developmentally-appropriate questions can be in-serted into the psychiatric assessment, including the degree towhich the child or adolescent acknowledges the reality of his illnessand has incorporated an understanding of the seriousness of hiscondition.6) Have the child draw portrait of himself. The clinician may use theInside the Body Test (Tait 1955), a measurement modified by

    Vessey (2000) that assesses children's concepts of their internalbody. In this test, a ten-inch line drawing of the body is providedon which chdren draw their representations of their internalbodies. This drawing exercise is followed by a discussion of thefunctions of organs and their relative importance. Informationgleaned from this aspect of the assessment can be useful inunderstanding attributes the patient ascribes to his own body aswell as the child's understanding of bodily organs and theirfunction.7) Assess the effect which illness behavio r and bod y image has had onimportant relationships most significantly parents, siblings, teach-ers and peers. Is the patient behaving in a regressed manner withcaregivers, teachers or healthcare providers or, alternatively, be-coming more oppositional or combative? Has there been deterio-ration in relationships with peers, such as social withdrawal,increased aggression or developmental regression? What is thecurrent status of the patient's relationship with siblings? Havesiblings been placed in the role of caregiver. Has there been anincrease in tension or conflict between the patient and siblings?

    8) Use scales. Body image (BI) measures have been used in a varietyof clinical conditions including eating disorders and chronic med-ical conditions. If the clinician opts to incorporate a BI scale intothe assessment of the patient, the choice of scale is important.Measures of body image used to assess children fall into two broadcategories: those which measure overall body image and include

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    tion, which is rarely a central aspect of the body image prob lem s ofmedically ill children and adolescents. According to Kopel (1998)"A comprehensive measure (appropriate to the assessment of bodyimage in chdren and adolescents) sho uld includ e an assessment offeelings about specific body parts affected by treatment, reactionsof others to the visible marks of illness, and views about bodyfunctioning" (p. 142). A clinically useful scale for body imageassessment in pediatrics, which has good psychometric properties,is the Body Image Instrument (Kopel 1998). This instrument hasfive subscales including general appe aranc e and bod y co m petence,value of appearance and body parts and others' reactions toappearance.

    Even if a scale is designed specifically for children with p diatrie illness,generic measures of bod y image and quality of life in ped iatrics sometimesfall short in the effort to identify specific issues encountered in specificdiseases. An example of an effort to confront this problem exists insurvivors of childhood cancers. In this population, the development of aspecialized instrument, the Impact of Cancer (IOC) measure, (Zebrack2009) assesses multiple domains including body image and importantobject relationships, which are designed with the needs of this specificpopulation in mind.B. INTERVENTION

    An eclectic approach is warranted when treating the child or adolescentwith medical illness and body image problems.1) Psychoeducational programs for children and adolescents withmedical illness seek to use educational materials in various formsstructured to allow patients to understand the nature of theirillness and its treatment. These programs can be instituted withoutthe involvement of a mental health professional.2) Psychodynamic psychotherapeutic interventions allow children toverbalize the nonverbal (e.g. psychosomatic symptoms, extremepain behaviors) and to express fears without being overwhelmed

    by them. The therapist can identify and interpret splitting, deval-uing, and transferen ce/countertransferen ce issues, which may be

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    sion of body image to include supportive caretakers, alternateobjects and activities to those relinquished as a result of iUness areeffective in promoting acceptance of the changes children experi-ence during chronic illness. The use of cognitive relaxation strat-egies, such as mindfulness-based stress reduc tion (Speca, 2006) canbe adapted and serve as a helpful tool in the intervention with themedically ill pdiatrie population,

    4) Stauffer (1998) found that group therapy is a powerful tool infacilitating emotional well being and social adjustment of childrenwith a variety of chronic medical ulnesses.

    VI. CONCLUSIONBronheim (1996) observes: "Isn't it interesting how often physically ill

    adults begin to behave like the children they once were? They act out theirinternal object relations and review the entire developmental cycle"(p. 515). The assessment of and intervention with medically ill children,focusing on body image and object relations, can lead to powerful relief ofemotional and, at times, physical pain. In addition, the long-term impli-cations for more successful adult adaptation in individuals who havestruggled with medical illness in childhood are myriad. Compared to theliterature on body image distortions in eating disorder patients, bodyimage problems in children and adolescents with medical iUnesses havereceived little investigation. This is an area of research that warrantssignificandy greater attention in the future.

    I will return to our narrator who goes on to describe the profoundemotional and physical effects of his childhood travails and how theypersisted throughout his lifetime:

    II y a bien des annes de cela. . .Maisdepuis peu de temps, je recomm ence atrs bien percevoir si je prte l'oreille,les sanglots que j'eus la force decontenir devant mon pre et quin'clatrent que quand je me retrouvaiseul avec mam an. En ralit ils n'ont

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    Body Image in Pdiatrie Illnessarrtes mais qui se remettent sonnerdans le silence du soir.

    Du Cote de Chez SwannMarcel Proust, 1913, (p. 45)Many years have passed since thatnight. . .But of late I have beenincreasingly able to catch, if I listenattentively, the sound of the sobs whichI had the strength to control in myfather's presence and which broke out

    only when I found myself alone withMamma. In reality their echo has neverceased, and it is only because life isnow growing more and more quiet roundabout me that I hear them anew, likethose convent bells which are soeffectively drowned during the day bythe noise of the street that one wouldsuppose them to have stopped, until they

    ring out again through the silentevening air.Swann's Way

    Marcel Proust(Scott Moncrieff and Kilmartin,

    Trans. 1981, pp. 39-40)REFERENCESBronheim, H. (1996). Psychotherapy of the medically iJl: the role of object relations. Journal of the

    American Academy of Psychoanalysis, 24:515-525.Cath , S., Glud , E., & Blane, H . (1957). The role of the body image inpsychotherapy with the physicallyhandicapped. Psychoanalytic Review, 44:'}4-40.Decker, J.W. (2000). The effects of inflammatory bowel disease in the adolescent. GastroenterologyNursing, 23, 6 3 - 6 6 .Engstrom, I. (1991). Paren tal distress and social interaction in families with children with inflammatorybowel disease. Journal of American Academy of Child & Adolescent Psychiatry 30:904-912.Faulkner, W. (1951/1994) Requiem for a nun. In J. Blotner & N. Polk (Eds.). Library of America.William Faulkner Complete Novels 1942-1954 (Vol. 4) NewYork: Library of America.Freud, S. (1961). The Ego and the Id. In J. Strachey (Ed & Trans.) The standard edition of the completework of Sigmund Freud (Vol. 19, pp. 3-66). London: Hogarth Press. (Original work published1923).Grey, M., & Boland, E.A. (1998). Personal and family factors associated with quality of life in

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    Kop el, S., Eiser, C , Coo l, P., Grim er, R J. , Carter, S.R. (1998). Brief repo rt: assessment of body imagein survivors of childhood cancer. Journal of Pdiatrie Psychology, 23 : 141-147.Kreuger, D. W. (2004). Psychodynamic perspectives on body image. In: T. F. Cash & T. PruzinskyThomas (Eds.), Body Image. New York: The Guilford Press.Meissner, W.W. (1997) The self and the body: the body self and the body image. Psychoanalytic andContemporary Thought. 20: 4 1 9 - 4 4 8 .Newby, W.L, Brown, R.F., Pawletko, T.M., Gold, S.H., & Whitt J.K.. (2000). Social skills andpsychological adjustment of child and adolescent cancer survivors. Psycho-oncology 9:113-126.Oppenheim, D., & Hartmann, O. (2000). Psychotherapeutic practice in pdiatrie oncology: fourexamples. British Journal of Cancer, 82 (2), 251-254.Pendley, J., Dahlquist, L., & Dreyer, Z. (1997). Body image and psychosocial adjustment in adolescentcancer survivors. Journal of Pdiatrie Psychology, 22 : 2 9 - 4 3 .Prou st, M. (1913/1981) Kemem hrance of Things Past (C. K. Scott Moncrieff; T. K ilmartin, & A. Mayor,Trans). New York: Random House.

    Schilder (1950). The image and appearance of the human body. New York: International UniversitiesPress.Speca, M ., Carlson , L. E., Macken zie, M. J., & Angen, M . (2006). Mindfulness-Based Stress Red uction(MBSR) as an Intervention for Cancer Patients. In Baer, Ruth A. (Ed), Mindfulness-hasedtreatment approaches: Clinician's guide to evidence base and applications, (pp. 239-261). SanDiego, CA, US: Elsevier Academic Press.Stauffer, M .M. (1998). A long-term psycho therapy g roup for children w ith chronic m edical illness.Bulletin of the Menninger Clinic, 62 (1): 15-32.Tait, C D ., & A scher, R. (1955). Inside-of-the-Body Test. Psychosomatic Mediane, XVII (2): 139-148.Thompson, R.J, Gustafson, K.E. (1996). Adaption to Chronic Illness. Washington, DC: AmericanPsychological Association.

    Vessey, J, & O'Sullivan, P. (2000). A Study of Children's Concepts of Their Internal Bodies: AComparison of Children With and Without Congenital Heart Disease. Journal of PdiatrieNursing, 15: 292-298.W allande r, J.L., & Varni, J.W . (1998). Effect of Pdiatr ie Chro nic Physical Disorder s on Child an dFamily Adjustment. Journal of Child Psychology & Psychiatry, 39(1) , 29-46 .Wallander, J.L., & Varni, J.W. (1992). Adjustment in C hildren with Chronic Physical Disorders:programmatic research on a disability stress-coping model In: Labeca AM, Siegel L, WallandeJL, et. al., eds. Adolescent Health Problems: behavioral perspectives. New York: Guilford Presspp . 279-297. .Zebrack, B. (2009). Developing a new instrument to assess the impact ot cancer in young adultsurvivors of childhood cancer. Journal of Cancer Survivorship, 3.174-180.

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